Monday 28 May 2012


A while ago, I started research into Raynaud’s Syndrome and Scleroderma. I hoped to a) raise awareness and b) try and help raise funds.

Most people will have heard of Raynaud’s Syndrome. My daughter was diagnosed with Raynaud’s in her teens. It is quite common in teenagers and often disappears when the sufferer reaches their twenties which thankfully was the case with my daughter.

Scleroderma is another matter entirely. I didn’t know anything about it until a friend mentioned the fund raising to me.

It is a disease of the immune system rather like Lupus, Multiple Sclerosis and Rheumatoid Arthritis. The name means “hard skin”, but the hardness is not limited to the skin and can affect the joints, blood vessels and internal organs.

It is very painful to live with and causes an endless list of symptoms.

Here are a few facts about the disease:

Scleroderma is four times more common in women than men.

It usually begins between the ages of 25 and 55.

Over 95% of those with Scleroderma have Raynaud’s, but the chances of someone with Raynaud’s actually going on to develop Scleroderma is very small.

There is no cure, but there are treatments to manage some of the symptoms.

Following diagnosis, 65% of people will survive for ten years. Research into the causes of the disease and better therapies for sufferers is vital.

The RSA (Raynaud’s and Scleroderma Association) is aiming to raise a million pounds for research to mark their 30th anniversary this year. They are still quite a way short of that figure and if anyone reading this feels they could donate, here is a link.


  1. Hi Theresa, I've never heard of this disease. Thanks for sharing this. I'll check out the link and also share it on facebook. Hugs

  2. It sounds a horrible disease and doesn't seem to receive the media attention of some other illnesses. Thanks for the info.

  3. What a revolting sounding disease, but I will check it out, as it certainly sounds as if more research is needed.

  4. Thanks, Liz - and thanks for sharing it x

    Hardly any attention at all, Joanne x

    There are so many people trying to raise money for them, Jenny, it does seem a shame that their efforts get little or no attention x

  5. That sounds a dreadful condition, Teresa - well done for raising awareness of it.

  6. It is, Rosemary - thank you for reading it x

  7. This sounds really dreadful. I'd heard of it and knew a bit about Raynaud's, but didn't realise how devastating scleroderma could be. I shall definitely go and have a good look. Thank you, Teresa, for raising awareness.

  8. Thanks for bringing that to our attention. I have heard of Raynaud's, but not the other.

    We were short on numbers at our writing group this morning, and all the conversation was about various illnessess. We even commented that if any new younger people joined today, we would put them right off. Oh dear.

  9. Neither did I, Joanna, until someone enlightened me. Thank you for checking it out x

    And there are so many to talk about, Maggie! But I bet you wouldn't put anyone off joining your group :-) x

  10. I've never heard of Scleroderma before Teresa, it sounds awful. Thanks for the link. Caroline x

  11. I wish it got more publicity, Caroline x

  12. Hi Teresa,
    Thankfully, your daughter's discomfort has ended. However, with your impassioned plea, I shall duly check out your link and see what I can do and shall link it and your posting on to my various social network sites.
    Take very good care,
    Gary x

  13. Thank you, Gary - yes, I am thankful my daughter "grew out" of Raynaud's. Thank you for sharing this :-) x

  14. Very horrid. There are so many nasty things that can happen to the human body.


  15. Hi Teresa, thank you for posting this information. And thank you everyone who is sharing and discussing Scleroderma. It's a horrible disease with life changing symptoms.